Gastrostomy Tube (G-Tube): Difficulty finding a formula that works

Posted by rakga @rakga, Mar 17 6:03pm

My husband is currently starting week 4 of his 7 week treatment with Cistplatin and radiation but is having the worst time with finding a formula that works for him. Boost, Ensure and KateFams all have resulted in traumatic vomiting or diaherrea, no matter the speed through syringe or gravity bag. He told me today that he no longer wishes to try anything else formula-wise.

But, his taste buds are almost gone and he can't seem to eat more than 6-7 bites of anything at a time. He's down about 20 pounds so far and I am terrified that he's not getting nearly enough nutrition.

So far, this is by far the hardest part of the journey to-date. 🙁

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I use a Nestle brand formula called Nutren 1.5. It was prescribed when my tube was put in. It's made for food tubes. The drinks like Ensure and Boost make me nauseous when I drink them. The high sugar is what gets me. I would avoid these drinks. Maybe ask you doctor or nutritionist for a few sample cartons of Nutren 1.5 to try. Good luck to your husband.

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My husband has had a feeding tube now for one entire year. He was diagnosed with pharyngeal cancer last March. He has used Kate Farm all year with no problems. Sorry it’s is not working for him. My husband has not been able to eat properly since he finished radiation in May 2023. His esophagus shrunk and he also has a lot of scar tissue which his ENT surgeon will not try to remove until June of this year. He has lost 40 plus lbs. He can drink Kate Farm Coffee and Chocolate drinks thru a straw. We pay for those flavors ourselves. They have calories and protein as well as other nutrients. I will advise you that the last three weeks of radiation were hell. His doctor didn’t tell us how bad it would be. Now everything in his mouth has been damaged and my husband is truly afraid he will never be able to eat any solid food again. We hope your husband’s experience is more tolerable.
❤️‍🩹

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Those formulas are all sugar, oils, and protein. So much sugar and fat can be hard to take.
The only one I found that did not make me sick was RealFood blends.
They are real puréed food. I did have to add some water to reduce the thickness a bit. There are several blends of different meals. You can find them on Amazon. They are definitely more expensive. I have two packs that I do not need anymore. They are 330 cal per pack

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@rakga, I hope you saw the helpful suggestions from @jclassey @7881188 and @sandy8043.

Rakga, have you and your husband found something that works?

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@rakga, I encourage you and your husband to look into SPOHNC, Support for People with Oral and Head and Neck Cancer, a large widespread support group in the USA. They have published cook books with recipes for all the various issues that we patients have faced to try to get enough calories in. I found them online at the suggestion of my oncologist. All their publications have been helpful to me and I am glad I joined and purchased them. While I didn't have a tube during or after radiation, I found homemade drinks and smoothies much more tolerable than any formulas.

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I went thru the same thing 2 years ago. He needs to see the nutritionist assigned to his radiation oncologist. A gradual feed (80ml per hour of formula with 150 ml of water every 2 hours) using a pump at night finally settled things down for me. Suggest formula of either Nutren 1.5 (has no fiber ) or Jevity 1.5 (has fiber). It takes stomach weeks to adjust from regular diet to liquid diet.

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My husband also uses Nutrin 1.5 and has been able to maintain his weight pretty well.

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@kcterry

I went thru the same thing 2 years ago. He needs to see the nutritionist assigned to his radiation oncologist. A gradual feed (80ml per hour of formula with 150 ml of water every 2 hours) using a pump at night finally settled things down for me. Suggest formula of either Nutren 1.5 (has no fiber ) or Jevity 1.5 (has fiber). It takes stomach weeks to adjust from regular diet to liquid diet.

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Welcome, @kcterry. Helpful tips for @rakga and others reading this discussion. Thank you.

May I ask what type of cancer you had? How are you doing now?

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@colleenyoung

Welcome, @kcterry. Helpful tips for @rakga and others reading this discussion. Thank you.

May I ask what type of cancer you had? How are you doing now?

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I had squamous cell carcinoma at the base of my tongue just below my epiglottis. It was finally diagnosed by a right neck dissection with lymph node removal in 2022. After 4 teeth then being removed and a feeding tube placed in my stomach I then had 33 radiation treatments and 6 chemotherapy sessions that has left me unable to swallow.

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